Feeling like you need your Caregiver to substantiate your symptoms
No myositis patient should feel their medical staff is not taking them seriously, especially because of their gender.
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Parenting with the winter yucks
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Long, cold, myositis winter: The realities of living...
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Infection watch!
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Tiny Hooves, Big Therapy
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The travels and tribulations of going on holiday...
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Surviving the Holidays with Myositis
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Facing rare disease alone
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Caring for Caregivers Webinar
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Surviving the Holidays with Myositis
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Watch Intro to Ra Pharma & the Potential...
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Kept Promises – “Love Never Fails”
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Take a hike Myositis
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Going out of my head
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Global Genes Patient Advocacy Summit Highlights Video 2109
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Month Five with Dermatomyositis
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Unexpected lessons learned while facing my new reality
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You must be doing fine!!!
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Getting up from a Toilet with Myositis
I Care
I Care -
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Coping with Loss
Anyone dealing with a chronic health condition (whether as a patient or loved one/care partner) can tell you, illness makes you think about things that...
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My Mom Has Dermatomyositis (DM)
Although my siblings tell me everything is fine, I know it's not. I'm with my mother every day... there's no way to make it look...
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You must be doing fine!!!
This image represents my determination, stubbornness, and desperation for something normal and happy in my #MyositisLife.
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Myositis ‘n Me
I have Inclusion Body Myositis (IBM); a rare and degenerative muscle wasting disease. It is an autoimmune disease with my symptoms starting when I was...
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Facing rare disease alone
Somehow, when you are sick, there is that feeling of dread that comes with being single that just makes you feel like this is it....
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Unexpected lessons learned while facing my new reality
I don’t want dermatomyositis to define me or take over my life, but sometimes I’m vulnerable and not the strongest version of myself.
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Pregnancy and Dermatomyositis
My mystery disease actually shows up as a result of the loves of my life. A mystery that is so worth each 9 months. No...
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The pain med taper debacle
The opioid crisis is real and should be addressed, but there is no excuse for the damage it has done to people with incurable pain....
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“Save Me” Song about Myositis
"Save Me" by Alyssa Smith is a song about myositis, released for Rare Disease Day 2019.
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A Light in the Dark: My Realities with Dermatomyositis
How can I raise awareness if I'm not honest and real about all that comes with dermatomyositis?
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Care Giver, A Poem
For Mavis, Love Stella. A Caregiver poem for a dear friend. I am the care giver you see me every where, but what you don’t...
